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We're in our 70's, married 56 years, and have 3 adult children and 7 grandchildren. When I talk to my husband on phone I cry (not characteristic for me). I try to keep busy, but his absence preys on me.
I am so sorry. It is understandable that you are missing your husband and all that was your life together as you both enter into this new stage as a result of Covid. It just doesn't seem fair, does it?
Hopefully you will gain strength and support from others on this forum. You are not alone.
I'm so sorry for what you are going through. Sounds like you are grieving not only the loss of who your husband once was, but also your life as it once was. Sadly things at this point will never be the same, and it's ok to grieve. But try not to get stuck there. There is joy to be found even in the midst of dementia. You may have to look hard for it sometimes, but it's there. Sharing with others that are going through similar things can certainly help too, as it's always nice to know that you're not alone, and that others understand. This forum is a great resource for you, and I would also recommend looking in your area for a local support group for caregivers, as I know in my personal case, that has been a real Godsend. Of course now they are meeting on Zoom, instead of in person, but it's better than nothing. The husband you married is still in there, and he still loves you very much, and I know he's grateful that you have stood beside him through this trying time. You're stronger than you think you are, and again, you are not alone. God bless you as you travel through this next chapter with your husband.
Hi funky grandma- I like your style! ....and your good heart. Happy to read the upbeat way you look at the situation, and you give good useful advice. Its a joy to see your message- thank you-stay safe-Tashi5
No, do not let go of your relationship. He needs you now more than ever. His disease may be advancing, but that doesn't mean he loves you less or you him. Love lasts forever. Your marriage vows didn't say that it's OK to distance yourself from him because of dementia. Now is the time you truly show your commitment to him. Soon you won't beable to talk to him because you won't understand a word he says.
Are you not able to visit because of COVID restrictions or because you don't think you could retain your composure? Most facilities are allowing visitors with certain restrictions. In the late stages of my wife's disease, where she couldn't communicate and lost all mobility, I was there for her and with her because I promised I would be. I know it's difficult, it's wearying, it's not what you wanted your later years to be. But once he dies, regrets of not doing enough can set in. So continue your caring, loving relationship.
PS- COVID did not cause or have any bearing on his dementia. The diseases that cause dementia begin many, many years before the symptoms show up.
The last of my mothers (a story for another time) was diagnosed with Covid at age 91 at the end of March, and was horribly sick for 3 weeks.
When she was diagnosed I requested no ventilators, as she had requested before she had entered AL, and the head nurse, who knew her well, said she’d try to honor my request.
I got very little information during the 3 weeks of her acute illness, and because of a paperwork problem, another relative several states away was getting information about her wellbeing.
She tested virus positive for almost 3 months, and finally she had 2 negative tests in a row, and was permitted to see me.
I will tell you that I expected very little, being so relieved that she’d just survived, but I’ve now seen her 4 times over about 3 weeks, and to be honest, her last 2 visits, she was MUCH MORE her old self. I can’t tell you how I love seeing her coming back.
Although we know that dementia is a progressive condition, we DON’T know the entire story yet about Clovid19. MY LO lost 16 of her110 pounds, and when I finally began getting calls about her condition, there were some serious concerns about her fatigue and lack of appetite.
In our last 2 visits, I’ve been encouraged to think that each time, I’ve seen a little more interest, a little more awareness that I’m there for her. At 92, I know that I could lose her, but still more encouraged each time I go.
So if you can, look for little improvements in his day to day progress, without thinking back to how he was before his illness. You might begin to see a glint of sunshine coming from the darkness that has been given to so many of these awful days of Clovid.
is he receiving PT/OT? His therapists may have some valuable and realistic comments for you about what his future may hold.
My “mom” is a crusty surly old maid, and I’m STILL grateful to say”I love you” when my visits are over, and I know she looks forward to hearing it too. Do what feels “right” in sharing you care and concern for your husband with him.
If he can get better, he will work all the harder to let you know he cares for you too.
Hopes and positive thoughts, and be sure to take good care of yourself, too.
Once the basic practicalities (powers of attorney, health care directives, all the paperwork) are dealt with, I think you probably *shouldn't* look ahead too much. You'll miss what you've still got.
You are already grieving the loss of this relationship - the way it was. may I suggest meeting with a counselor or therapy group that deals with loss. You don't need to break off the relationship, but you will need to find new ways of living with the changes.
You don't have to "let go" of the relationship but you have to let go of what it WAS and change your expectations to what it IS. He is STILL your husband Even if you divorced he still is a major player in your life, helped shape who you are as a person. You can not ignore or change that type of influence. One of the women in the support group that I go to (Have not met in a while officially) coined a phrase that I think is appropriate. She called herself a "Married Widow" sort of says it all. Still married but he is not there physically, mentally, emotionally. She would go visit but it was not the same. You need to refocus on who YOU are. Keeping busy is one way. But it will take time. Grief is not just an emotion that happens when someone dies. But this is a death just the same, a death of a marriage, of a bond that has held strong for 50+ years. Let yourself grieve. Give yourself time. Don't be hard on yourself. You have done the best that you can, and you have done what is best for him. Be kind to yourself. If you can though try not to cry when you are on the phone with him, he will not understand the tears. (even more reason to cry..) but it may upset him after you hang up since you do not know what his reaction is after the call.
I am so sorry you are going thru this. There is no right or wrong way to deal with what you are going thru. However I agree with Taarna, that finding a counselor will help you, in fact tremendously. We are never taught life lessons on how to deal with issues like this in our lives. Personally I don't think you need to let go, but try to take care of "you" more, and discover things that will help "you" to enjoy life more. I suspect you are dealing with some depression at this time because you have been so focused on the health & well being of your husband. Focus on your own health & well being, drop any guilt, and you will find more answers because you will have more strength to cope. Wishing you the best...
I’m so sorry. They call this disease the long goodbye because we caregivers are in a continual state of grief - mourning the person and each wretched step in this progression. I found talking to a therapist very helpful and also support groups - folks going through the same process but at different stages. We could all help each other. My husband is in a nursing home under hospice care. When I see him, I tell him how much I love him, how wonderful he is, and I sing some old songs. I know his essence is still in there somewhere. It is a lonely life and I wish you the best.
Hello, I would start by looking for a support group in your area. His assisted living facility may even have a support group which meets there periodically or they might be able to recommend one locally.
Aa a daughter of a mother with dementia since 2010. To see her decline makes me sad, angry, confused. I gain support from my sisters and family. I worry I will be the same..57,,,mom is 98. Read and research... Take care of yourself and I am setting myself up so my kids don't have to go through as much as we have already. It's always the safety and well-being of my mom. Some people in the family thinking about what is left for them. As the financial conservator I told them to stop ✋ all that stressing...mom will out live you. But honestly I plan on spending all of her money 💰 on her. I have calculated her care and life with increase of cost for another 5 years. I have not come to terms with her dementia but as much as the struggle is I have come to awaking. I digress. Take care of yourself first so you can enjoy what time you have with your loved ❤ one.
Trish, My mother is 98 as well. The decline is heartbreaking and so sad. I still have not come to terms with my moms illness/decline. I get support from my family too, but it is so hard sometimes. Good for you for spending her money on her. I am spending all my mothers money on her and don't care what others in the family think. It is her money and I will use every last cent for her.
If you want to let go of the relationship you will have emotional and physical problems. You must have had it mostly good. You will always have that "good stuff" and that what has kept you together. When his dementia progresses where he does not know you....You know him and contact will help you both. When the time comes and you decide to end the contacts or visits in the future....lengthen your visits out and see if you feel good about "your relationship". When He dies you will lose all the posative history of Companionship, but it never leaves you. The hospice chaplain will then help you advance thru your grief. If at anytime you want to end the relationship....Your insurance provides psychological counseling and you will be able to "live with your decision". It would be good to find that licensed person now. You will always have that "Bond" of posative "History" that will stay with you forever. You need help now.
Hopefully he is in an area/facility that might allow outdoor visits. They recently started that with my mother's facility. Sadly we still have to mask up and stay 6' apart. Between dementia, serious hearing loss and Mac Deg, along with the distance and mask, I am not convinced she knew I was there. Up until the lock down, she still knew who I was, every time I visited.
Depending on the underlying cause of dementia (as someone else indicated, not likely the virus - dementia can be simmering under the radar for quite some time before it becomes apparent), progression can be faster or slower. I believe mom's is vascular. She's been in MC not quite 4 years, and is living in her time line about 40+ years ago, but still "here." Others who moved in around the same time or even later, with about the same capability, are already gone, either passed or moved to NH.
If he was hospitalized and/or anesthetized during that stay (induced coma for instance), that could have set him back. Sometimes it can take a few months to get back to previous status. On the other hand, it could be a more progressive form of dementia. Also, do have him checked for a UTI - these affect elders, esp those with dementia, in really odd ways! I was a skeptic, but only until mom experienced extreme sun-downing with her first UTI in MC! Since then it has caused night time bed wetting (read SOAKING!)
I have noted that mom used to periodically ask about my brothers, who don't visit. One hasn't been there in over 2.5 years. The other only a few times/year, generally because I needed him to take over appts for Mac Deg as I couldn't support her weight. Out of sight, out of mind, and she eventually stopped asking about them, yet knew who I was because I visited regularly. I won't know for sure until we can do REAL visits whether or not she remembers me now (have been in lock down since mid-March.)
So, if at all possible, do try to have real visits, not just phone calls. If they will allow outdoor visits, do that, and see how it goes. It is tough to watch a once vibrant person spiral down with this awful condition, so it is understandable how hard this is impacting you. Being in some lock down yourself just adds to that feeling of isolation and loneliness, but do try to stay active in some way, eat healthy, get some exercise and fresh air, and interact with your children and grandchildren as much as you can! Staying socially active is important for you and your husband - even if he doesn't reciprocate, he may be aware.
As time passes, he will regress more. Take cues from him and the staff as to how often visits and/or calls might be "productive." Stay strong, at least for him. You can try to hold back the tears for when off the phone or visit. Certainly you need to fill the void with something, to keep you busy and not focused on what he is going through. Don't forget about him - he meant a lot to you and you to him!
My mom's dementia has deepened in the past 6 months, especially with being isolated in a new SNF. For the past few years I have been her care advocate taking her to medical appointments, haircuts, etc. We would always stop for a meal at her favorite restaurants or pick up a treat for her to enjoy later.
Now each time I go somewhere or eat a treat I have a pang or guilt knowing I can’t share that with Mom. But I have to remind myself that she probably wouldn’t remember our trips, and at 93 had had a lot of treats! So focus on recalling the good times, cherish those memories instead of regretting what you can’t change about the now.
Imho, you should locate a support group in your area. There is one in Brooklyn, New York. I did not place it here for non advertisement rules, per se. Ergo, it can be googled. Prayers sent.
I think you should do what you feel best on any particular day. Certainly relax any regime you have if it makes you feel better. Yes make time for yourself. Try playing it by ear a bit more, have some days you don't go in - and if he currently understands then explain you have something to do and won't be in, start building your independence (and his) and move on as the dementia increases. Good luck and hugs to you.
I think Grandma1954 said it very aptly when she wrote: "You don't have to "let go" of the relationship but you have to let go of what it WAS and change your expectations to what it IS. He is STILL your husband. Even if you divorced he still is a major player in your life, helped shape who you are as a person. You can not ignore or change that type of influence."
It reminds me of a friend of mine who told me she was thinking of divorcing her lovely husband so that she "would not have to worry about him at all." I pointed out that he had been a part of her life for quite some time and I guaranteed that she would STILL think about him after the divorce, especially since they owned a business together. (She decided to stay with him.)
With the aging process, each of needs to "let go" of how things used to be - for ourselves as well as our spouses. It is quite an emotional adjustment to do this, but it is a necessary task.
You don't "let go" of a long relationship, you evolve into a new relationship with that person. As several have said, you may grieve the loss if how things were, but focus on what the relationship is now. Be as good as you can be at new phases of your relationship.
Hally, In my opinion, you do not need to let go of your relationship with your husband. You may need to wear different hats, one of loving spouse, another as caregiver, and at different times.
However, in your new role as a 'caregiver' to spouse, there are attitudes and mindsets one can develop that will give you a buffer or emotional distance, kind of like a professional, when speaking to your husband, inquiring about his day, and being positive, more upbeat, and not crying. Crying when you hang up.
You might still be in shock at this new turn of events, requiring him to be away from you. Not being able to make a plan for the both of you to be together. Maybe you do not yet know his prognosis for sure or (will he get better?). And your needs are going unmet it appears.
If he is in an AL that is more like a retirement home with caregivers, and a nice dining room, you might consider moving in with him in an AL apartment, even if you would need separate bedrooms and you do not need care. Think, 'as if' you both retired and moved together to an assisted living. Could that be a possibility? Or something that you would want?
Has your husband had the rehab necessary to strengthen him, even though he is in a wheelchair?
I know how hard this is ,my husband died from ALS in January . I kept him at home , and loved him the way he deserved to be loved . You may need a support group that deals with the issues you are facing . You can do this , you just need to show up and visit him . Pulled away from him now doesn’t make any sense.
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Hopefully you will gain strength and support from others on this forum. You are not alone.
Sharing with others that are going through similar things can certainly help too, as it's always nice to know that you're not alone, and that others understand. This forum is a great resource for you, and I would also recommend looking in your area for a local support group for caregivers, as I know in my personal case, that has been a real Godsend. Of course now they are meeting on Zoom, instead of in person, but it's better than nothing.
The husband you married is still in there, and he still loves you very much, and I know he's grateful that you have stood beside him through this trying time. You're stronger than you think you are, and again, you are not alone. God bless you as you travel through this next chapter with your husband.
Happy to read the upbeat way you look at the situation,
and you give good useful advice.
Its a joy to see your message- thank you-stay safe-Tashi5
Are you not able to visit because of COVID restrictions or because you don't think you could retain your composure? Most facilities are allowing visitors with certain restrictions. In the late stages of my wife's disease, where she couldn't communicate and lost all mobility, I was there for her and with her because I promised I would be. I know it's difficult, it's wearying, it's not what you wanted your later years to be. But once he dies, regrets of not doing enough can set in. So continue your caring, loving relationship.
PS- COVID did not cause or have any bearing on his dementia. The diseases that cause dementia begin many, many years before the symptoms show up.
The last of my mothers (a story for another time) was diagnosed with Covid at age 91 at the end of March, and was horribly sick for 3 weeks.
When she was diagnosed I requested no ventilators, as she had requested before she had entered AL, and the head nurse, who knew her well, said she’d try to honor my request.
I got very little information during the 3 weeks of her acute illness, and because of a paperwork problem, another relative several states away was getting information about her wellbeing.
She tested virus positive for almost 3 months, and finally she had 2 negative tests in a row, and was permitted to see me.
I will tell you that I expected very little, being so relieved that she’d just survived, but I’ve now seen her 4 times over about 3 weeks, and to be honest, her last 2 visits, she was MUCH MORE her old self. I can’t tell you how I love seeing her coming back.
Although we know that dementia is a progressive condition, we DON’T know the entire story yet about Clovid19. MY LO lost 16 of her110 pounds, and when I finally began getting calls about her condition, there were some serious concerns about her fatigue and lack of appetite.
In our last 2 visits, I’ve been encouraged to think that each time, I’ve seen a little more interest, a little more awareness that I’m there for her. At 92, I know that I could lose her, but still more encouraged each time I go.
So if you can, look for little improvements in his day to day progress, without thinking back to how he was before his illness. You might begin to see a glint of sunshine coming from the darkness that has been given to so many of these awful days of Clovid.
is he receiving PT/OT? His therapists may have some valuable and realistic comments for you about what his future may hold.
My “mom” is a crusty surly old maid, and I’m STILL grateful to say”I love you” when my visits are over, and I know she looks forward to hearing it too. Do what feels “right” in sharing you care and concern for your husband with him.
If he can get better, he will work all the harder to let you know he cares for you too.
Hopes and positive thoughts, and be sure to take good care of yourself, too.
He is STILL your husband
Even if you divorced he still is a major player in your life, helped shape who you are as a person. You can not ignore or change that type of influence.
One of the women in the support group that I go to (Have not met in a while officially) coined a phrase that I think is appropriate. She called herself a "Married Widow" sort of says it all. Still married but he is not there physically, mentally, emotionally. She would go visit but it was not the same.
You need to refocus on who YOU are. Keeping busy is one way. But it will take time. Grief is not just an emotion that happens when someone dies. But this is a death just the same, a death of a marriage, of a bond that has held strong for 50+ years. Let yourself grieve. Give yourself time. Don't be hard on yourself.
You have done the best that you can, and you have done what is best for him.
Be kind to yourself. If you can though try not to cry when you are on the phone with him, he will not understand the tears. (even more reason to cry..) but it may upset him after you hang up since you do not know what his reaction is after the call.
Take care of yourself and I am setting myself up so my kids don't have to go through as much as we have already.
It's always the safety and well-being of my mom. Some people in the family thinking about what is left for them. As the financial conservator I told them to stop ✋ all that stressing...mom will out live you. But honestly I plan on spending all of her money 💰 on her. I have calculated her care and life with increase of cost for another 5 years. I have not come to terms with her dementia but as much as the struggle is I have come to awaking. I digress.
Take care of yourself first so you can enjoy what time you have with your loved ❤ one.
My mother is 98 as well. The decline is heartbreaking and so sad. I still have not come to terms with my moms illness/decline. I get support from my family too, but it is so hard sometimes. Good for you for spending her money on her. I am spending all my mothers money on her and don't care what others in the family think. It is her money and I will use every last cent for her.
Depending on the underlying cause of dementia (as someone else indicated, not likely the virus - dementia can be simmering under the radar for quite some time before it becomes apparent), progression can be faster or slower. I believe mom's is vascular. She's been in MC not quite 4 years, and is living in her time line about 40+ years ago, but still "here." Others who moved in around the same time or even later, with about the same capability, are already gone, either passed or moved to NH.
If he was hospitalized and/or anesthetized during that stay (induced coma for instance), that could have set him back. Sometimes it can take a few months to get back to previous status. On the other hand, it could be a more progressive form of dementia. Also, do have him checked for a UTI - these affect elders, esp those with dementia, in really odd ways! I was a skeptic, but only until mom experienced extreme sun-downing with her first UTI in MC! Since then it has caused night time bed wetting (read SOAKING!)
I have noted that mom used to periodically ask about my brothers, who don't visit. One hasn't been there in over 2.5 years. The other only a few times/year, generally because I needed him to take over appts for Mac Deg as I couldn't support her weight. Out of sight, out of mind, and she eventually stopped asking about them, yet knew who I was because I visited regularly. I won't know for sure until we can do REAL visits whether or not she remembers me now (have been in lock down since mid-March.)
So, if at all possible, do try to have real visits, not just phone calls. If they will allow outdoor visits, do that, and see how it goes. It is tough to watch a once vibrant person spiral down with this awful condition, so it is understandable how hard this is impacting you. Being in some lock down yourself just adds to that feeling of isolation and loneliness, but do try to stay active in some way, eat healthy, get some exercise and fresh air, and interact with your children and grandchildren as much as you can! Staying socially active is important for you and your husband - even if he doesn't reciprocate, he may be aware.
As time passes, he will regress more. Take cues from him and the staff as to how often visits and/or calls might be "productive." Stay strong, at least for him. You can try to hold back the tears for when off the phone or visit. Certainly you need to fill the void with something, to keep you busy and not focused on what he is going through. Don't forget about him - he meant a lot to you and you to him!
Now each time I go somewhere or eat a treat I have a pang or guilt knowing I can’t share that with Mom. But I have to remind myself that she probably wouldn’t remember our trips, and at 93 had had a lot of treats! So focus on recalling the good times, cherish those memories instead of regretting what you can’t change about the now.
It reminds me of a friend of mine who told me she was thinking of divorcing her lovely husband so that she "would not have to worry about him at all." I pointed out that he had been a part of her life for quite some time and I guaranteed that she would STILL think about him after the divorce, especially since they owned a business together. (She decided to stay with him.)
With the aging process, each of needs to "let go" of how things used to be - for ourselves as well as our spouses. It is quite an emotional adjustment to do this, but it is a necessary task.
In my opinion, you do not need to let go of your relationship with your husband. You may need to wear different hats, one of loving spouse, another as caregiver, and at different times.
However, in your new role as a 'caregiver' to spouse, there are attitudes and mindsets one can develop that will give you a buffer or emotional distance, kind of like a professional, when speaking to your husband, inquiring about his day, and being positive, more upbeat, and not crying. Crying when you hang up.
You might still be in shock at this new turn of events, requiring him to be away from you. Not being able to make a plan for the both of you to be together. Maybe you do not yet know his prognosis for sure or (will he get better?). And your needs are going unmet it appears.
If he is in an AL that is more like a retirement home with caregivers,
and a nice dining room, you might consider moving in with him in an AL apartment, even if you would need separate bedrooms and you do not need care. Think, 'as if' you both retired and moved
together to an assisted living. Could that be a possibility? Or something that you would want?
Has your husband had the rehab necessary to strengthen him, even though he is in a wheelchair?