Emotional roller coaster(1)

CatladyNW

Although I’ve been reading this discussion group for months, I’ve never posted.  My DH has had Parkinson’s for a number of years, and more recently, what I believe is Parkinson’s dementia.  He recentlymoved into AL because of deteriorating mobility which led to a series of bad falls. He refused to accept any limitations and kept trying to do things he wasn’t capable of. It was crisis after crisis; we were frequent flyers with the EMT’s. Ultimately, he ended up in a wheelchair and I couldn't manage his care at home. Through it all, he insisted that he was fine, but there had been personality changes, too. My outgoing, happy husband turned sullen and irritable.  He had trouble following TV show, stopped reading, etc.  We never got a diagnosis of cognitive impairment from his neurologist, maybe because he always managed to put on a good front in the doctor’s office, and the focus was on the physical aspects of PD. When I started reading other people’s stories here, I began to understand what was really happening.

This last week Covid swept through the AL, and my husband tested positive. It has really wiped him out, both physically and cognitively.  He is confused, out of reach. I think it is a preview of what is coming. The nursing staff says that it is brain fog, and I guess that is a part of it, but in reality I know that he is just gradually losing his ability to process thought, and Covid has accelerated the problem. I know I am luckier than many who write here, because he knows who I am, and I no longer bear the burden of his care 24/7 (although I don’t think I will ever sleep through the night again as long as I live). I visit and get to see him, but I leave in tears every time because I don’t see my husband, just a shell of the person he once was. It's like a photograph that keeps fading, until nothing is left but a blurred outline. No one who has not been through life with a partner with a brain disorder can understand the pain of seeing him/her deteriorate bit by bit. I can’t imagine life without him, and the thought of it puts me in a state of total anxiety.  We've been married for 40 years, how will I even live without him?? But part of me just wants to be free of the pain of watching this happen. I hope that I will have a few remaining years - "after" -when I can live in peace without constant sadness and strain. Then I feel guilty for those thoughts. Anxiety, sadness, guilt, over and over. 

Just needed to get it out to somebody who might understand. I belonged to a Parkinson’s support group, but it didn’t work out. The folks dealing with everyday care are facing a different set of impossible challenges and they didn't understand that it’s not easy once your loved one is placed in care, either. There were those who said: how could you put him in an institution?  Or: you have it made, your problem is solved  They just didn't understand - it's different for everyone, and it's never good.  

I also wanted to thank all the folks here who write so eloquently about their own situations and share experiences and information. You helped me get through a lot of long nights.Prayers for all who are losing their loved ones. 

PookieBlue

Cat lady, 

Thank you for your post. Most of us, I think are just taking it a day at a time and we make whatever necessary adjustments that we need. It is an emotional roller coaster and it is draining. Sometimes you wonder if you can make it another day, or even another minute. Some days we cry throughout the day, hiding our tears if anyone comes near. Thinking of all the What ifs? What if I decide to place my LO? What if I keep my LO here? What is best for DH or DW? What is best for me? What will happen if I am no longer able to provide the care that is needed?Why do family members appear to not really care? Why? There are infinite uncertainties. I hope your DH will get past the current illness and that you will have easier days. I hope you will find some very helpful advice. Just know that you are not alone and there are people who understand and care.

Dio

Catlady, so sorry you are on this roller coaster ride. Many of us are riding it, too. You will be supported here. Sounds like your husband is suffering from Parkinson's Disease Dementia, which is almost identical to Lewy Body Dementia. I've learned to expect the unexpected and that no two patients are alike. Just need to learn as much as you can about the symptoms and prepare for anything. Wishing you luck.

M1

Hi Catlady.  Don't feel guilty, if you can, about your thoughts about "life after."  I bet your husband would want you to live on happily;  I know I would feel that way if my partner weren't the victim here and were to outlive me.  You love that person enough, you want their life to be a good one.  I feel sure he would tell you that, if he could.  There was an article in the Washington Post just this week about the feelings of relief after death of a loved one:  this was by a woman who had lost her dad at a young age, and she was reluctant to admit what relief she felt when he finally died.   I think it's just part of it.  We live with such long, ambiguous loss in these slow deaths---who wouldn't be glad when it's over?  Doesn't mean you don't love the person and miss them with all your heart---but I know I will be saying "thank God she's not suffering any more."  Wanting to live a normal life is a normal thing.  If you ever read The Last Temptation of Christ--that's what Kazantsakis posed as the temptation:  not to be an immortal deity, but mortal, and normal, and human.

Belldream

I am so happy you posted! This is such a safe and supportive place. The choices you make in your caregiving journey are very personal and shame on anyone who judges these choices!

I understand completely your repetitive emotional rollercoaster. My husband has been in an institutional setting now for almost 2 months and I cry on the way to see him and I cry all the way back home. He is coming home next Tuesday and I am both happy and wary. I don't know that I can provide the best care and keep him safe anymore. I will give it a try, while applying for Medicaid and visiting Memory Care units. He has told me in his lucid moments that he wants to come home and have it be "just me and him". Though he really doesn't know where he is right now or even what year it is, what state he is in, or who the president is. Most of reality has faded away. Part of me is ready for him to be cared for by those who are there 24/7 trained in Alzheimers care. Part of me feels guilty for feeling that way. I see so many caregivers caring for loved ones until the end. I also wonder if his confusion or brain fog will clear a little coming back to a more familiar setting surrounded by his things. Though he was already starting to be confused about this being "home" before he went into the hospital, and we've lived here 9 years. I guess that wasn't long enough. We all have so many challenges and sometimes the choices we make will make way for some more joyful moments together. I wish you all the best in your journey and  know that you are supported here in any decision you make. Always remember that you are doing your best for your loved one.

CatladyNW

Thank you so much for your support! As I am sure you know, this is a very isolating experience, and while I wouldn’t wish this on anyone else, it's comforting to know that I am not alone and that people do understand.

PookieBlue, I have the same questions and fears. We have to make such critical decisions about care and it is hard to bear total responsibility for a LO’s well being. My DH never wanted to talk about what might happen in aging, he was the ultimate rose colored glasses guy. I’m not sure he would have been happy to have me making all the decisions now!

DIO, thank you for that insight.  I’ve been searching this site for information on PD and LBD and found some good links for information

M1, yes, “ambiguous loss” describes it perfectly. We miss and grieve for the person we loved and the relationship weshared, but we still have the reality of a LO who needs constant and increasing care. 

Belldream - I hope bringing your husband home works out well.  I know you will do your best, and that is the most you can ask of yourself. I hope you get to have some happy times before he is placed in MC.