Portrait of Minna and granddaughter Ellie – January 2019
Took the first photo at the supermarket. I WANT MY OLD LIFE BACK.
I drew the portrait of my granddaughter, Ellie, and me, after we visited my son and daughter in law’s home on December 25, from a photograph my husband took of us. I needed to draw something that brought back some light into my life, because…darkness has descended.
A lot has happened.
No more Ruth. The relationship is over and it ended badly. She said she couldn’t do it anymore. Said she would never see me again. For those of you who have been reading my blog, you know this is a great loss.
This was the woman who told me she would be my friend until the end. She’s a Jehovah’s Witness and said that the devil rules the world. And then she acted like the devil was inside of her. It happened on December 23rd. Two weeks ago. My functioning has gone way down. Without her friendship, I have felt like I’m in solitary confinement. She refuses to have anything to do with me, and it’s NOTHING that I did. She just said, she can’t do it anymore. How to move forward? It has been very hard. I shared so much with her. No one I can visit in this town. No where to go. No safe zone.
My dementia mentor said to be thankful for the 8 months she was my friend. Try not to go to the negative. Appreciate what she was able to do. But I am devastated every day and am very afraid. Now my husband has started to interview home health aides. Complete strangers. I don’t want to have to depend on a home health aide, but I may need to. I wanted a friend. I had one and now it’s over. I did not destroy this relationship. She did. She said she couldn’t do it anymore.
Her friendship was helping me to be more functional. Much more functional. I would walk to her apartment. I would never get lost when I had being with her in her apartment as a destination. I was so glad to have a friend I could visit. It felt so safe. I thought she understood. That she “got me”. That she had compassion for a poor soul who was stricken with early onset Alzheimer’s. But then I changed again and progressed in this horrible disease. The babbling started. Then she started complaining that using her walker to get here made her body hurt too much. That she can’t come over so much. That she would need to take Uber’s, which she did for a while. Then she got sicker. Macular degeneration, and her blood pressure went up. She didn’t feel comfortable coming here any longer, she said, and she didn’t want me to come to her apartment anymore. So now there’s much more pressure on my husband who is exhausted, often critical and when he can’t handle things, he has meltdowns. I am not able to be alone so much anymore (sometimes it’s hard for me to be alone for five minutes!), and he has limited capacity to be with me. How to avoid his having meltdowns, keep myself occupied, and not cause friction? I am extremely hurt. Abandonment is what has been happening to me over and over, since this disease started. Now this woman who promised to be my friend until the end, has abandoned me completely. She was cruel. She went from being the kindest and most compassionate, to being the coldest and cruelest.
People turn cold when dealing with Alzheimer’s. Spouses abandon their loved ones. Friends abandon friends. Why are people so cruel?
I know that everyone who has Alzheimer’s is different and declines differently and at different rates and speed. I know that the brain atrophies in this disease, and that is the reason for the changes. Two years ago I had mild cognitive impairment. It has progressed to full blown Alzheimer’s and progressed rapidly. I am scared. I know that I am dying. This is a new year, and I’ve been experiencing the changes that come with late moderate stage. Nonsensical speaking, talking to myself, great difficulty walking, I lumber along and often shuffle, difficulty chewing and swallowing. Now I have difficulty getting up from a seated position and often need help to stand up.
I try to think, but most thoughts are gone, the ability to think things through is gone. There is mainly emotion. And now I am devastated because the only friend I had will never see me again. The only relief is when I am asleep but I don’t sleep for over 5 hours, and often 3. The last time I had 7 or 8 hours sleep was over 3 years ago. I have prayed to G-d to take me, and then been so scared when it feels like I am actually dying. When it’s been hard to breathe, when tight bands constrict around my chest and I feel like I’m having a heart attack (this happened the other night in bed and I cried to G-d, “can’t you take me without causing pain?”.
I get scared. I’m gradually regressing to an infantile state of mind. Babies don’t think, they feel.
*****
Finally did get up with my husband’s help today. No way around it, had to shower and wash my hair because I was dirty. Had to push through with whatever I have left. showered and washed my hair. A major victory. My husband had to sit in the bathroom with me. He needs breaks and went out and I managed to get the adult bib on and sat down to the breakfast he left for me. Ate slowly, chewed deliberately, swallowed carefully. My husband told me if I am going to be able to walk outside I will have to get moving. I dried my hair thoroughly with the hairdryer, put on my sweater and down coat. Managed to zip it and waited for him to take me out. (As I read these words- “waited for him to take me out”, I am dismayed that this is who I have become, that I need him to walk me, like a person would walk a dog). When we got back I asked him if he would sit with me as I did puzzles. Still have to do things to pass the time. Still have to get through each day. At this point, I can still do puzzles. Real physical puzzles made by Ravensberger, designed for little children ages 4+. I did each of these twice today. I completed both of them twice, pulling the finished parts closer together, and somehow fitting these together with the parts already done. I persevered. My husband sat next to me and did something on his computer. I can see that he will need to find activities for me in order to get any time for himself. As he sat there he ordered another Ravensberger 60 piece puzzle on his iPhone.
I was resilient until this disease took over. I could shrug off difficult things and recreate myself. If something didn’t work out, I would plan my way out of the quagmire. This was possible while I was still working. I had goals and was always very busy. Before I progressed. Once I had to retire from work and could no longer do the things I did independently, the feeling of futility and emptiness generated by a childhood that had me always looking for love, came back to haunt me. I became dependent, helpless and with an endless need for attention. Maturity guards against these feelings, and while I was living a worthwhile productive life and succeeding in my career, I thrived. If a relationship didn’t work out, there were other relationships. If a goal could not be attained, there were equally satisfying goals to go after. There were self help books, therapy, interesting new people to meet, ways to thrive. Now all of that is gone. Now there is Scrabble, drawing, crossword puzzles, television. The simplest things are hard to do. Dressing, going to the bathroom, getting out of bed and brushing my teeth. I am regressing to a state of infantilism, and I have been fighting this as much as possible. I am still fighting this unbeatable foe, but I’ve needed support. Ruth was my support. My encouragement. I needed that and now it is gone. I warned myself that I was becoming too dependent on her. Prescient.
*****
Over the past few days I have noticed that I do not know where I am when I go out walking with my husband. After a certain distance, I am able to recognize landmarks, but can’t connect the dots and fear getting too far away from my house on my own. I have been going for walks with my husband. I haven’t dared to go further than a few blocks to the park when I’m alone. I remember being confident, dauntless and going everywhere myself. The last time I traveled alone was on the PATH train to get to the Rubin museum. That was around seven months ago. I still know the route, but do not have the ability to take public transportation alone anymore. I am now afraid. Very afraid. I have little stamina, and am getting weaker. Can’t even walk that far. I have no control over what is happening.
*****
My husband took me for a walk downtown to see where the senior citizen center is located. It felt like a long walk, and I didn’t really know where I was. He was investigating whether they have any day services for peoples who have Alzheimer’s. They do have Bingo, and bus trips to the mall. But this isn’t a service for someone with a disability like Alzheimer’s. It’s for senior citizens who get bored and lonely, and need companionship and something fun to do, to break up their week, and give them opportunities to socialize. If I were there alone, I would panic and might start babbling nonsensically. People would think I was crazy. I am NOT crazy. I have a disabling disease that is causing major cognitive impairment. There are NO services in my community for people who have this disease.
I can imagine it is very hard to be friends with someone who is losing their mind. Hard to be friends with someone who one minute makes sense, and the next may be babbling incoherently. I have been advised to take the high road. To be thankful for the eight months that she offered her friendship, and opened the door to her apartment, and welcomed me in. Thought that since this is my blog, I have every right to spill out the details. But I see that no matter who it is, even the most noble person, does not want to give their life and time over to a disease that is robbing another persons life, changing their personality, their ability to function well by themselves, to speak and interact. No one wants this. There is no peace or joy in it. Yet I must express how sad I am. How losing this friendship has made me feel like I am in solitary confinement. No one to talk to all day, except my husband, when he willing, no socialization, no friends except for virtual friends on the computer Zoom chats with members of Dementia Alliance International and Dementia Mentors, and that is only for a couple of hours a week. These people are wonderful, but they also have their own garden variety dementia. Only one seems as progressed as me. Some have trouble following a conversation. Some have trouble walking too, and use walkers, but do not have much cognitive impairment, no memory loss. Lewy bodies, vascular dementia, and some with very mild Alzheimer’s, that doesn’t seem like Alzheimer’s to me at all. All of them are braver than me. I am Chicken Little with Alzheimer’s, and the sky keeps falling.
*****
Her sister, Jeanne, still comes on Wednesdays. She returned my keys that I’d given to Ruth, but I asked her to hang onto them in case of emergency. I hope that she won’t let what Ruth did stop her from visiting. I know she likes to play Scrabble with me when she comes. What happens if I can no longer play Scrabble? Will that mean she won’t come here anymore? Maybe I’ll still be able to play gin rummy.
I took a photo of her sweatshirt when she was here. At least I was able to read and understand it and see that it’s funny.
So here are the photos that I take every day when I’m finally up and dressed and ready. They are all different days and yet they are also all the same.
This one is different. I think of it as a sinking American flag.
And here is my husband preparing food for me for the next days, assembly style. He’s always pragmatic.
Finally these three tomatoes caught my eye, and I told my husband that I would like to draw them. I told him I thought they were beautiful.
Beauty is in the eye of the beholder.
Love is blind.
I thought I had a friend.
Suddenly Mad 
Oh Minna…feeling for you. Sounds as if Ruth is going through stuff too. I hope it works out for you….Sorry I haven’t been in touch lately. Been going through stuff too.
Take Care the best you can and remember God Loves You
Jack
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Hi Jack,
I think you can imagine how hard this is. Yes, obviously Ruth is going through stuff too, but that is no reason to be cruel and abandon me, in my opinion. To cut someone off who you promised to be there until the end, is simply cruel. I have been careful and only texted her once, and sent a photo from better times, of both of us laughing together. No answer.
How is your wife? Can you tell me what she’s like now? Thank you for writing and staying in touch.
Minna
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Sad that you’re friend can’t see how much could be gained from your friendship for herself as well as you.☹️xx
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Hi Wendy, Thanks for your understanding. It’s a big adjustment not having her support and communication any longer. It caused me massive confusion and much upset. I am very sad. M.
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So sad reading this blog post. I hope you can find a way to regain a little hope & confidence. It’s not your fault. If you can forgive your friend you won’t be quite so weighed down by the way you are hurting. Keep blogging (post more often), keep drawing & painting, take lots of photos (post a collage of them-perhaps choose a theme or have fun editing them first) but most importantly ‘keep your chin up’, as we say here in the UK. Best wishes, Catherine
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Hello Catherine, I know it’s not my fault. She took on something she couldn’t handle, and caused so much damage. It’s the way in which she abandoned me that has been so harmful. I do not know if I will ever regain any hope or confidence. Since this happened my functioning has gone way down. Posting as much as I can, but now that I know that there are people like you routing for me, I will try to post more. Keeping my chin up for you today, and for those who care.
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So sorry about your friend. It does sound like she was having issues of her own. I think some people are scared they will say or do the wrong thing around someone with Alzheimer’s. Unfortunately their solution is to stay away, I am praying God will put another friend close by.
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Hi Laura, Thanks for your sympathetic response. Clearly this woman has many issues of her own beyond her physical health. To go from kind and supportive for so many months – to cruel and abandoning when I am so much in need of continuity, trust and friendship, is about the worst thing someone can do to a person with Alzheimer’s. I hope your prayers are answered. I do need another friend who lives close by. Minna
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I’m sad that you’ve lost your friend but happy for your words here. Truly, you’ve inspired me to live my best life.
Lily
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Lily, You can not imagine how hard this has been. A person with Alzheimer’s needs loving support that is continuous and validating. Please keep reading my blog and writing to me. M.
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Minna, my heart goes out to you. I’m so sorry Ruth is refusing to see you anymore. What I’ve discovered with people like Ruth is they are afraid, just as you are afraid. They can’t face how your disease is progressing and therefore cannot figure out what to say anymore, how to act, or even how to be a friend. Fear is everyone’s problem when it comes to Alzheimer’s disease. Now, you are afraid because you don’t have her friendship.
When I was caring for my mother who had Alzheimer’s, and living in an assisted living situation, I would talk to other family members caring for their parents or spouses only to discover they, too, had been abandoned either by friends or other family members. It’s not you, Minna they are afraid of, it’s the disease. I can only imagine how you feel losing your friend who promised to be there until the end. I wish I could be there with you, I would gladly spend time with you walking, talking, working puzzles, listening to music, whatever you needed. You are still a person, a person with feelings. I do understand how your husband gets impatient, this happens with all caregivers. This is not to say it’s ok, only that caregivers seemed to think they’re alone trying to navigate what to do next for their loved one.
Maybe your husband has already tried this, but just in case he hasn’t, it would be helpful for him to contact the local Alzheimer’s Association and talk to someone there about the programs they offer that will be helpful to you and also for him. They are such compassionate and loving people.
I love the drawing you did of yourself and your granddaughter. You are still an amazing artist!
Minna, thank you for sharing your story. I know it can’t be easy to bare your soul about such personal things. I for one, am truly touched by your story and I will keep you in my prayers. My prayer for you is to know that G-d is in control and loves you more than anyone on this earth could love you. I pray that you will put your trust in Him and to deny any fear that tries to overcome you.
God Bless you, Minna ~ xox
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Dear Linda,
I am taking your words to heart, because you have walked this path and know how this journey is fraught with twists and turns and yes so much abandonment. What Ruth did was heartless! Absolutely heartless. She took me into her world and encouraged me to trust her. She told me she would be my friend until the end, and then turned around and destroyed what little confidence I had left. It has broken me. Yes she witnessed progression. My nonsensical speaking and increasing neediness. My fears. She knew how important her friendship and support was. She knew and still did this. Purposely. I do not think I will be able to get over this betrayal. From someone who professes to be a child of G-d – a Jehovah’s Witness. I surmise that maybe she is mentally ill. She said the world is ruled by the devil, and became demonic herself. If you could have witnessed the way she behaved you would be horrified.
My daughter connected my husband to an Alzheimer’s caregiver support group and he is going to a meeting on Thursday. I am facing the next few days alone, and fear that I will not be able to function here alone. Fear I will not be able to get dressed and eat myself. Fear that I am at a point that I need much more support than ever before. The disease is progressive and there is not a thing that anyone can do to stop it. Friendship and validation are the only things that help. Ruth gave that and then she smashed it. She literally closed the door on hope. G-d is with me of course. Thank you for writing.
-Minna
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I love what you said to Minna, it’s exactly what I was going to say, Linda. I’d also encourage you and your husband to contact the local Senior Resources Center to see if there was a daycare program for you to participate in, Minna. Although you may not be as advanced as most people in the program you could be helpful with the people in the program with your artwork skills now and it would give you people to be with who understood your social needs. Our Jewish Center here has a wonderful group that meets 5 days a week from 8:30 to 5 with transportation provided.
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Hi Minna. I feel your hurt and your frustration and your fear. And I agree with everything Catherine said: I love your writing and your art and your photos, and you’re helping me so much to understand what my partner has gone through, is going through … she has never been able to express it.
Let me try to be practical.
Here are the issues, as I see it. You miss friendship and companionship terribly. You want to stay as active as possible, physically and mentally. You still want somehow to make a contribution, to feel worthwhile. But for all these things, you increasingly need help. You hate losing your independence, and you’re fearful about the stress that taking responsibility for you is putting on your husband. You see him looking for home-care assistance, and you can only see it as the first step towards the thing you dread – you’ve talked about it before … being warehoused. So we need to counteract all of that.
As you know, my Care Combine project is a plan to share care. The basic idea is simple. Lena can’t go out without me. But instead of just going out alone together, I could easily take a couple of other people with dementia too, giving their caregivers a break. It’s good for both of us. Lena gets to mix with other people, not just boring me. And if the other caregivers reciprocate, I get a break. Right now, I’m trying to institutionalise the idea – getting a group of 20-30 together for meaningful, purposeful activities every day, all day, and giving caregivers the opportunity to take 5 out of 7 days a week off (if they want to). More fun. More purpose. Much less stress.
So how could you set this up informally? Well, you say your husband is going to an Alzheimer’s support group this week. Why not get him to tell people that you’re looking for friends nearby who share your interests: art, museum visits, film-making, writing. People who might like to learn to draw or paint or write … or even make films – you could help them. Suggest to him that instead of spending all day most days amusing you, you could work with a little group of like-minded friends – and maybe their spouses could share the ‘minder’ responsibilities on different days.
With 450,000 people diagnosed with dementia in New York, there must be at least a handful who don’t want to play Bingo and love the things you love. Maybe through the support group, he can help you track some down. If successful, it’ll be relief for him too. Trust me on that. I know exactly how he feels, wondering how on earth he’s going to keep you amused if it’s just the two of you alone.
If there’s no luck with the support group, you might try contacting CaringKind and talking to them about their Connect2Culture program. Their website is caringkindnyc DOT org. Or The Met has monthly gallery tours for people with dementia and their partners- the next one is Jan 23rd. Through both these, you might find kindred spirits, new friends – and partners ready to share care with your husband.
You won’t get the old life back. But you might yet have a new one.
Wishing you everything good.
Alan
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Dear Alan,
Thanks for your reply. I really appreciate that you are trying to help. I really do. However, your ideas are not really applicable to our situation due to my progression. I think you imagine that I am much more functional than I am because I can write and describe my experience. However, I’m progressing my dear Alan, and I’m a fast progresser. Two years ago I received a diagnosis of mild cognitive impairment.Now the diagnosis if full blown Alzheimer’s. Two years! What does this mean? I’m regressing both physically and cognitively. Unlike Lena, I am not a wanderer. I have awareness of what is happening to me, but my abilities are impaired nonetheless. The crazy systems I put into place to keep going and remain independent are breaking down. Everything is changing. Things that my husband set up to help me are falling apart as my thinking and dexterity are becoming further impaired. My walking is dis-coordinated, and I’m not recognizing where I am if I am more than a few blocks from my house. Please understand that the fact that I can write about my symptoms, does not mean I am able to function and am stable. The disease is progressing every day and there is more and more decline, and it is scary.
Of course I don’t want to be warehoused! I don’t think my husband wants to do that to me either. Our situation is extremely complicated. My husband works in and drives to another state three days a week, and works remotely on his computer the other two days) this means he works Monday – Friday. He needs to provide for us financially. Look at a map. He works in Bridgeport, Connecticut and we live in Hoboken, New Jersey. He can’t afford to retire.
Your ideas for the Care Combine might work where you live and because you are retired and own your home. We still have a mortgage!!!
We live in a bedroom community populated by people ages around 25-40. There are no other people with Alzheimer’s here. It’s very likely I am the only person with younger onset Alzheimer’s who lives here. I’m not in Manhattan. We’re in Hoboken, New Jersey which is across the Hudson River from Manhattan. I can no longer travel by myself on public transportation (bus and Path train, or even with taxis or Uber). The last time I traveled alone on The PATH train to Manhattan to The Rubin Museum’s program for people with dementia was in June and July. I did it but it grueling, battling to get a seat during rush hour, and crossing the big intersections alone. I did it then, but it’s not possible now. I’m stuck here in Hoboken, unless my husband drives me. In the spring and summer, my husband took me to the Alzheimer’s Association support groups in Manhattan. It was hard to do but I had the fortitude to take the bus with him and walk across Manhattan with him, and attend. The groups meet on a day that he works, but he would take his computer and work from there, as I attended the group. This stopped when the weather got colder. I think the last time I went was September.
As far as your idea for a Care Combine type approach working here- People with Alzheimer’s progress. You can see this with Lena. Can she have a conversation with someone who is less progressed than she is? This would cause great frustration for the person who is less progressed, and probably a lot of fear. My husband works in Connecticut 3 days a week (Tuesday, Wednesday, Thursday) and works remotely on his computer Monday and Friday. We live in Hoboken, New Jersey. If you look at a map you will see that it’s 65 miles in between.The caregiver support group he plans to attend on Thursday is in Connecticut (Westport) is 50 miles from Hoboken. He plans to go there by taking a break from his workday. Caregivers in Westport, Connecticut won’t travel here to be involved in a Care Combine type program.
I am familiar with the Connect2Culture program. I have gone to the Metropolitan Museum with Ruth’s sister Jeanne once which is one of the Connect2Culture programs. Her restriction is to come her on Wednesday only, for 4 hours, so if a program is not on Wednesday she won’t go.
It’s possible that if my husband hires a home health aide who drives (he is interviewing a woman on Friday who drives and says she has experience with people who have dementia) that I can attend a program in West Orange, New Jersey for people who have Alzheimer’s. As far as programs in New York City, my husband would have to take time off work, and drive us.
You talk about kindred spirits and friends. Can Lena connect with people and make friends? I find that even people in the earlier stages are not really able to become “friends”. When I attended the program at The Alzheimer’s Association, I tried to connect with early stage people. It didn’t lead to any connections that lasted. Most don’t use a phone or email.
Anyway, I know you want to be helpful and I appreciate you for that. The nature of this disease is progression. Think back to the time when things were starting to change with Lena. She must have been very different then. I have to take this one day at a time, and so does my husband.
Each time I am able to write a blog post is a victory, because it means my cognitive abilities are not all gone.
At this point my socialization and support is mainly the online Zoom chat support groups with Dementia Mentors and Dementia Alliance International. Dementia Mentors is on Monday and Friday, and DAI is at four on Thursdays. I do have a yoga teacher who comes once a week and that too keeps me going. One day at a time.
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Minna, this is a page you and your husband may be able to find information about programs that could have help for you in Hoboken. They might be able to have people that could help with in-home aides or daycare programs for you to participate in so that you had something productive and interesting to do while your husband was at work during the day. I found it online as I don’t live in your area, but it’s similar to what we have in our county. https://www.nj.gov/humanservices/doas/services/aads/index.html
I hope this helps along with his visit to the support group on Thursday. I hope with a person coming in to help you will be able to adjust to being at home. Having someone else there with you will seem strange at first, but when you find the right person it will be a fun adventure and so interesting.
Your drawing of you and your granddaughter is beautiful. Your artwork is so lovely and your writing is amazing. I hope one day all of your blogs are put into a book along with the art and photos included as a guide to everyone dealing with dementia. You have taught us all so much in such an honest and openly direct way.
Keep writing, write more. We appreciate learning from you. We love you, Minna.
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Hi Zuzu, These are good suggestions but there is nothing in this county for younger onset. There is a program in Union City which is close by but is mainly Hispanic (so much for studying French in high school lol). I may go with my husband and have a look out of curiosity. Will give me something interesting to write about, anyway. There is a program for early stage in West Orange at The Jewish Community Center. It would be a 45 minute drive, and not something my husband will enjoy, but that too will likely be tried. I know this JCC as it’s the same place I had applied to job for many years ago – Cultural Program Director. Another haunting irony of getting sick with this progressive illness.
Thanks for the encouragement to keep writing . Today I was asked to present my drawings and read excerpts from my blog for the Art Workgroup I belong to on Dementia Action Alliance USA. Was glad it went well. I was told my contribution re. the writing, drawings and blog, are unique in it’s honesty and ability to convey the experience of dementia.
Sending love, Minna
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Dearest Minna,
So very sorry about the loss of your dear friend. This is so hard. Our friends had good intentions, but over time they all disappeared safe one. This one friend comes once a month for a few hours, and even though we appreciate and always look forward to his visit, it is over so quickly. This is a lonely road for sure.
The aide your husband is getting for you, may work out fine. Maybe even a kind of friendship will develop. I know it is not the same, but you have dear friends right here, people who care about you deeply and are holding you up. Wishing you all the best, dear far away friend,
Ruth (the other one)
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Hi Ruth, Today I was here all day while my husband went to work. I went online to participate in the monthly Dementia Action Alliance art workgroup. I had been asked to make a presentation of my artwork and drawings, and talk about the blog. It went well! I was able to convey the difference between making art as a hobby, and the use of the drawings in my blog. I read excepts of some of the posts. The members of the art workgroup are mainly “normal” people who work in the “dementia” field, creating programs, and advocating for change in the way people with dementia are included (or excluded) from society. A small group of people who have been diagnosed with neuro-degenerating disease (Alzheimer’s, Vascular dementia, Lewy bodies…) also log on and participate. Not sure if you ever participated in this kind of teleconferencing and what this looks like. Each person in a bpx in a grid with others speaking and listening. I was glad to be able to remember how to share my screen and show the slide presentation I’d prepared in iPhoto and show them what my blog looks like on my computer, and read from it. ANYWAY, I felt valued. It was a kind of victory after what happened with Ruth, as it pulled me out of my slump for a while.
It’s a long and lonely slog with dementing illnesses. I think (the other) Ruth, was feeling pulled too far down by all of it. My neediness, my self centeredness – traits that are hyper-magnified with Alzheimer’s decline was too much for this woman who generally likes to be alone, with her cat on her lap, and is content to go to the hairdresser once a week, watch Hallmark movies, and invest herself in studying Jehovah’s Witness scripture. In other words she wasn’t someone I would normally have been friends with when I was well. She knew this. I knew this, and so it was just a matter of time until the oil and water of our personalities separated. She said I made her feel like a caregiver which is not what she wanted. What riles me is the powerlessness I felt, when she said she couldn’t do it anymore. Her departure was abrupt and cruel. She literally threw me out of her apartment, and threatened to call security if I did not leave immediately. That was beyond humiliating. Stunning in it’s cruelty and infliction of emotional distress. I was capsized. Today I realize that she gave what she could, but handled her departure very very badly. It did not have to end this way, but did, and it was not my fault. I’m curious about the future. Taking it one day at a time. No other choice. I’m not as depressed today as I had expected to be. Sort of welcomed the quiet of being alone after the Zoom chat. My husband returned from work and we had dinner together. Tired, he’s gone to be already. I fell asleep sitting up on the sofa, and just awoke to write this to you. Thanks for writing and caring. Sending love to you on this weird parallel journey.
-Minna
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your blog is an inspiration to many.
please remember that.
blessings
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Thank you Annie. It’s for you and those who respond that I write. M.
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This is the 1st time I’ve read you Minna but I remember meeting you online at a DAI event. My partner Veda & I live 2 hours south of Sydney Australia & are good friends with Kate Swaffer. I’ve been a DAI subscriber almost since it began & Veda has been a member for years. We are founding members of the #KiamaDFC & its advisory group, the #KiamaDAGs.
The issues you raise about genuine friendships & commonalities, abandonment, physical distance, need for company, limitations of support groups, etc. are all too familiar to us.
Our region has an extremely high older population (Veda is a “young” 68, a retired rock musician). Public transport is difficult & impossible for most PLWD to navigate alone. Lots going on culturally but that requires money & transport (I had to retire prematurely 9 years ago to support V, so we’re poor).
We have been running a social peer support group, the #Southerndags, for several years now. But it’s so difficult to find & entice people out of the safety & familiarity of their homes. Community Facebook groups have helped to publicize our existence a lot (we also run community education sessions), but I think we need to “do a Richard Taylor” & get all our local medical practices to pass on our details to every patient newly diagnosed.
Veda no longer participates in DAI chats (her PPA makes following group conversations too difficult). She needs real people, real – not only virtual- company. But as you know too well, that’s daunting for most others, who simply don’t want to think about dementia, let alone learn!
If it helps any, I’ve found through our local group & national/global activist friends, most of whom live with dementia, a whole new community that enriches my life. My anger at abandonment & exploitation is receding at last, & I hope to be more effective as a result. ❤
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Hell Lynda, Thanks very much for reaching out to me. Kate has talked to me about you and Veda. You are a wonderful partner and caregiver. Sounds like it’s been a long journey with PPA for Veda. 9 years? I’m 2 1/2 years from diagnosis of Alzheimer’s, but it was going on for a year or longer before that in hindsight. I’m a fast progresser in this disease and aphasia has been happening in the last six months or so. Pardon me for asking questions, but would like to hear more about what this “journey” has been like for you and Veda. Is she able to dress herself, shower and bathe alone, write, draw, play her musical instrument? Is her memory affected? Is her physical coordination and walking affected? I have read about PPA, and know it’s affects speech but see it’s quite different from Alzheimer’s in that it affects specific parts of the brain that have to do with communication. Alzheimer’s that progresses as it has in me is a global impairment and I know it’s affecting my frontal lobes now similarly to what happens in Fronto Temperal disease, of which PPA is one. Can you describe a typical day with Veda? Would love to hear more about you and the lives you live, and how you manage.
Very best, Minna
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Sorry to read this, to hear what you’re going through. Whilst I have no suggestions or experience that can help, I hope that knowing there are all these people out here in Internet Land wishing you well is a consolation and some comfort for you. We all do wish you well.
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Thank you for saying that Terry. It means a lot to me.
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Thanks for linking my post
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