They really have no idea!!

blacksparky · February 24

My DW has had EOAD for a little over two years now. I am finally realizing that my family and friends have no idea what we are going through. I welcomed their wanting to help with suggestions or articles they found to help us. As my DW’s symptoms have advanced, everyone has given their opinion on placing my DW in MC. I have told them that I plan on keeping her home as long as I can. She still is able to complete all ADL’s but her memory has diminished quite a bit. She sometimes can’t remember my name but she does know that I am her protector and tells me daily that she loves me. Everybody now feels that I should put her into MC. I just received a text from my mother that really upset me. Here is the text:
I woke up this mornng at 4am back in Pico Rivera listening to you crying

I don’t want to go to Nana’s acting the way Pam is now but normal.

She is a little girl now and not your wife so you know she will never know you as a husband again.

Please treat her as a child and not letting her make decisions like not leaving the house cause she Is now a child

Please come see me even she says No

I will treat her like a child who needs a mother’s love.

Please enjoy your visit with Kevin cause you lost a lot of time not having him in your life and you both need each other.

Please start looking for a place for Pamella where she will be taken care of all her needs and you can

visit her

you should think about it cause it may take awhile .

And you can spend time with her there.

One of the hardest but best decisions you will have to make in your life but you will because you love her and want the best for her

Just don’t take me out of your life

I need to see you like always so you have to make that happen PLEASE

All my love

Mom 🩷

trottingalong · February 24

This is a tough one. It sounds as if this is coming from a mother concerned about her son that she loves. It’s easy for someone not living in your shoes to easily say “just put the person in ….” But it’s so much harder to contemplate when this is your partner and someone you love deeply. I’m sure this text was meant to be loving, not upsetting, but here you are. My husband has Alz. When his mother had it, he and his siblings spoke to his dad about putting her in a care facility. That upset him so much that his 7 kids collectively decided it was dad’s choice and they would support him no matter what decision he made. He was 90 and she was 88 when she passed away and he cared for her at home the entire time. Maybe asking your mother or family members to just support whatever decision you make for yourself and your wife will help. I’m just sorry you are going through this.

Jazzma · February 24

I think Trotting Along is right. My family has consistently opined on what I should do with my DH, who has had Alzheimer's for 10 years now. None of them understand the difficulty of the situation, the depth of love and grief, the financial strain, the exhaustion that comes with caregiving, and none of them have offered to help. In my case, I put him in MC after a hospital stay and kept him there for a year at great expense. New medications have made him much easier to care for and I brought him back home. Most of my family vehemently opposes that decision. I know they're concerned about me, but I've asked them to respect my choice because I'M the one who is living with it, and I know the circumstances better than anyone. I hope you can get some support.

Chris20cm · February 24

I know this is going to sound really selfish but here's what I think:

I am in my 8th year as a 24/7 caregiver for my DW who is in stage six Alzheimer's. My adult children are very uncomfortable with seeing their mom's cognitive deterioration. They think it's time to get her into memory care or assisted living. I don't think she is emotionally capable of that. She loves our home and has severe separation anxiety when I am out of her sight, but I believe she would tolerate a few days or weeks occasionally at the home of one of our adult children. They are all adamantly refusing, but for the caregiver, that would be a Godsend. Our health and well being depends on having some sort of respite or vacation. It's great to be committed and responsible, but we matter too, don't we?

B2ingua · February 24

Chris I hear you and share your pain. My dw is in year 10 and likely stage 6. Most of my family have been trying to get me to put her in Mc for years or assisted care and I should go with her. Months ago I read here from someone we are totally on our own and I believe that. I also believe a fair amount of friends are not comfortable with her condition and they don’t have time for us either. My plan now is to matter how poor is to take her to daycare or bring people in often enough this summer to see if I still have a life or want one.

eaglemom · February 24

This is a tough one, on many levels. You are speaking the truth blacksparky, your family & friends have absolutely no idea what you are going through or dealing with. That is the key to remember, they are speaking like they understand or know, and they don't. This is where you have to stand firm on your decision. They (family & friends) don't get to vote on this, because it doesn't involve them, it involves the two of you, period.

As for the text, forgive me, but that test has nothing to do with your caregiving. I see it as a mom wanting attention, more attention. (This is something I'm dealing with also. And its coming in texts also. But she wants me to take care of her & my DH - that would be her ideal world. Not happening.) Less I digress. Your LO isn't a child, she's your wife with a diseased brain. Maybe your mom and family need to read up on ALZ and understand what is happening to your LO's brain / life? They still wouldn't totally understand, but they would have some knowledge at least.

I hope I've not over stepped and upset you further, I certainly didn't mean to do so. The last thing you need is drama. So you need to figure out how to respond to everyone so they'll stop suggesting placement, at least for a little while. Thank them for caring so much that they have an opinion, but you are the head of the house and for now, things are staying this way. If that doesn't help then you'll have to try something else. Both you and your LO need calm.

eagle

CindyBum · February 24

I am literally sitting in the parking lot of an MC, crying my eyes out. My first tour of such a place and the enormity of all of the decisions we must make and the care we all give and the heartache hits.

No one has a right to force any MC decision on us. We do know what we’ve taken on as caregivers and must be the captains of this ship we are on with our LOs. That is straight up how it is.

Though I am sobbing about that reality and that I will have to make this decision for my DW and me, I am also prepared now to do that when the time comes. And no one will tell me when that time is. I will know.

Hang in there. Xoxo

Crkddy · February 24

I understand what you are going through. My wife has early on-set and was diagnosed 7 years ago. She is at home and I have been the primary care giver with some assistance from private care CNA's a few hours a week. I am actively working to place my wife in a good Memory Care facility because I've reached the end of my rope……burned out, tired of being lonely, needing to find something in life besides caregiving. I love my wife but I'm not sure I'm doing the best for her and I worry that if something happens to me (or her), I'll be forced into a care situation that I don't like. Only you know what's best for you and your wife. In my opinion, there are no wrong answers…………just tough choices.

trottingalong · February 24

https://alzconnected.org/discussion/comment/237110#Comment_237110

I agree with you.

B2ingua · February 24

agree 110%

Marchbanks · February 24

https://alzconnected.org/discussion/comment/237118#Comment_237118

I was exactly where u are 3 weeks ago. I have since toured 2 other facilities and it’s gotten better each time. Not easier but better emotionally. It did occur to me that you can hire someone to care for your loved one, but you can’t hire someone to care about them. Yes, they will shower him and make sure he takes his meds but they won’t know that he gets scared at night sometimes or that his feet get cold or the foods he likes. I’ll pull the trigger on MC when I can’t cope any more but not a minute before that and I won’t let anyone tell me different. My guess is there’s plenty of tears in MC parking lots.

Quilting brings calm · February 25

who is Kevin? Is he your son and is he needing more attention than you are giving him? Before you give your mom some grief, stop to consider if she is seeing things more objectively than you are.

Your wife may not need MC yet, but it’s possible that she might enjoy day care and that you might benefit from some free time. After all, it appears that you were crying at 4am and your mom heard you.

Carl46 · February 25

QBC, that is good advice.

Psychologist on TV said the other night that "Caretakers should treat selfcare as a necessity, not as a selfish indulgence." I have been a caretaker since 1969, and I know she is right. I have had to pace myself, because I have often been caretaker for more than one person at a time, for years at a time, while earning a living for a family, and literally could not devote my entire life to any one of them. At age 78, I still care for a disabled son and a wife with dementia, and there is still only one of me. I still have to pace myself, and that includes finding some time for me.

My doctor thinks my high blood pressure is partly due to the stress and time demands of caretaking, and I agree with her. My son has been in an RCF for many years, and my wife is starting adult day care within the next few days. I think she will enjoy the socialization, and I need the help. One of the things I will do while she is in day care is visit MC facilities. Another is take a walk in the park. It was 75 and sunny today, and I missed it almost completely.

You are all adults, and I am not going to tell you what to do unless you ask for advice. But what I am doing is taking care of myself at least enough so that I don't stroke out and leave my dependents on their own. And Chris is right. We matter too.

[Deleted User] · February 25

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Bridge4 · February 25

I also strongly agree that it is important for us as caregiver’s to be receptive to advice from family and friends who love us and can offer a fresh perspective from outside the caregiver-PWD “bubble”. Our LOs are victims too of course, but this dreadful disease causes behavior that is off the scale in abusiveness and self-centeredness, which would be unacceptable in any normal situation. I hear a Mom who is: 1)Worried about losing a son; 2)Concerned that a caring relationship with “Kevin” is being destroyed; and 3)Fears that her son is throwing away potential prospects for a future that could be more fulfilling in the one life he has to live. Those are the words of a mother’s love, which can sound like insensitivity and criticism when we are too far down the rabbit hole. Like many of you here, I too plan to continue to sacrifice the life I expected to have to care for my DW at home as long as possible, despite the unappreciation, anger, agitation and abuse. However, I am learning through therapy and these support groups that one of the hardest things I will need to be able to do is to take charge and be the voice of reason on key decisions, despite the angry protests of my LO. To that end, we need to keep listening to those who love us and can provide us a viewpoint from outside the “bubble”. As we know, the Cavalry Is Not Coming so we need to step up to make sure that not only are our LOs well cared for, but that our own health and the relationships with all those friends and family members who love and care for US can be maintained as well.

harshedbuzz · February 25

@blacksparky

I feel pain in your mom's text. I can imagine that it is very hard to sit where your mother is right now— watching her son as he loses himself in the care of his life's partner knowing that time is passing and that there may not ever be a time after for either of you. Depending on your mom's age and health, you may be running out of time with her, and you could be one of the 1/3 of caregivers who doesn't survive their LO.

Playing devil's advocate, I watched my mom be consumed by dad's care. She became stressed and didn't take the care of herself that she should have. She was like the frog in the warm pot of water set to boil— she was too close to see the bigger picture. I advocated for placement to allow her some respite; I'd already toured a dozen places to create my Plan B should mom become unable to care for dad in the event of death or disability. She fought me for a long time until I posed the idea of placement as being the only way she could make that choice rather than me doing it on the fly and accepting "first available".

Dad passed within a few months in MC. In the summer after, mom had 2 medical crises that were the direct result of her self-neglect— not following up with doctors (I would stay with dad for appointments) or refilling prescriptions. As a result, she lost the vision in one eye and can no longer drive. This has meant she is no longer as independent as she'd hope to be in stage 8. And neither am I.

HB

Biggles · February 25

Life sometimes is very tough and mixed messages often come from those closest to us thinking their advice is best. With Alzheimers and Dementia only the partner really knows about the bond with each other, the trust and reliance our partners have, even through the traumatic ups and downs. Also a mother’s love is so deep she too needs reassurance that you will visit, phone and will defiantly be involved when possible in her life. She sounds worried and scared for you and herself and her relationship with you. It’s such a big task. Your DW is totally reliant on your decisions for her, she cannot make any decisions, the ball is in your court to make the decisions that are right for you and your DW. It’s so hard and I wish you all the very best making these decisions.

trottingalong · February 26

https://alzconnected.org/discussion/comment/237184#Comment_237184

wow, a very good discussion. Thank you for sharing this.

eaglemom · February 26

I think this is a healthy good discussion that we are having. And I know in my case, its made me think a little bit more about several things.

There are those of us whom have no "blood" family except for our LO. That can and should be another thread of its own. That's the boat I'm in. (My MIL is alive, quite elderly and many, many mental problems of her own. She's in a facility now.)

I think we all, as caregivers need to have a Plan B. We have Plan B hoping to never need it. For many of us I would assume placement would be that option. Looking now doesn't mean anything other than looking.

eagle

They really have no idea!!

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