GrammyM, I cared for my husband (Lewy Body Dementia) in our home for ten years. He died in our bedroom, holding my hand. Almost no one in my caregiver group was able to keep their loved one at home the entire journey, and I'm grateful that I could.
BUT
My husband retained his pleasant personality. Yes, there were very difficult episodes, but overall he was cooperative, satisfied, and willing to do what he could to enjoy our life together. If he had been a negative, self-absorbed,controlling, spouse who cared for no one but himself, I most certainly could not have kept him at home and retained my own health and sanity. I would still have loved him, and honored my marriage commitment to him, but it would not have been as his hands-on caregiver.
May I ask why your husband is still in your home? Doesn't it bother you that you may very well die before he does? My heart goes out to you. I am really curious why you remain in this untenable situation?
Article is good, but to be frank, after being a caregiver to my spouse for 9 years, I've heard it all. Routine, clues, listen, stay connected...really? Please tell me after 9 years of caring for a negative, self-absorbed,controlling, spouse who cares for no one but himself, what is the answer. He argues with his doctors, refuses to listen or take meds unless I practically force the pills in his mouth. He will not shower, brushes his teeth maybe once a month, refuses to have anyone in and screams and has temper tantrums at the very thought of a 'stranger' in the house. I'm at wits end. His PCP has given up on him and shakes his head during check-ups. I haven't been on a vacation in over 9 years---not even for one day. We have no relatives that live nearby---not even in the same State. I am so lonely and depressed. And if I am, so are a lot of other caregivers. In fact, my spouse's PCP told me he would be very surprised if I didn't die before my husband! That made my day. However, I realize the doctor is only being honest. There are days I feel like putting my husband on a hospital doorstep and leaving him there. Am I normal to feel this way?
I am glad you guys realize the importance of a daily routine. Often times in our young age we like change and a rapid paced life, however, as we age a routine is safe and comforting. My mother is really fond of her daily routine since it brings purpose and normality to her day to day life.
Hi Renata! We featured this post in our Weekly Digest. Thanks for sharing these tips. It is very helpful for caregivers and family members. With this guide, they can improve on looking after their loved ones who need long-term care.
I'm not sure I understand why you would get someone up 10 minutes earlier either. And while schedules and routines are great, I have found, my Mama (dementia) does best when I somewhat let her wake on her time. When I awaken her early, she is very confused and non responsive...whereas if I let her wake up on her own, which is usually around 8:30 or so, she is much happier, alert, etc. since we are home anyway, not sure why I would want to get her up earlier...Sometimes meals take a while anyway, and I just let her eat on her own pace and I do things in between if necessary...she finishes her meals that way and feels like she has a little control over her own routine.
I don't understand the suggestion to get someone up 10 minutes earlier so they don't have to rush breakfast. Why not just have breakfast start and end 10 minutes later. We are talking about aging at home, right? Why would there have to be a rush through breakfast?
When I found it difficult for my husband to get ready in time for his adult day health program pick-up without rushing, I changed his pick-up time.
I really get nervous when I hear suggestions about "just get up earlier," as if sleep needs were flexible and not critical.
After reading #3 it made me feel good and bad:( I have my mom living with my husband and myself. She is 90 and has been with us for almost 5 months now. The hardest thing I face is she doesn't want to be left alone. I can understand this but whenever I make arrangements so I can go somewhere she starts telling me she really should get her own place. We have had our discussions about assisted living which she doesn't think she really needs but she does. At the beginning of this article it states how nice it is for the person to be able to age at home. So after reading this I think this is where I should keep her as long as I can take care of her. It is just so hard sometimes when I would like to go somewhere without having to make arrangements or feel guilty for leaving. She has some dementia, poor vision( can't read anymore) and has peripheral neuropathy in her legs so requires the use of a walker. She has a pleasant disposition and gets along well with my kids and my husband. If she really wants to move I want her to be happy but I don't want her to move just because she feels she is keeping me from my activities. Has anyone else had this issue?
I have a comment about creating the routine in the day, and a question: COMMENT: My Dad is in a Memory Care Unit, and they DO have a routine. In the AM, they actually cook breakfast in the cottage kitchen, because they say, the SMELLS of breakfast help with getting residents up and going. When a resident is resistant, I notice that they do not push, but simply go to another and then in 5 minutes, come back and try again to get them to the table, or to take their meds. Frequently, by the time they try again, the resident has already forgotten about their resistance.
QUESTION: relative to someone with dementia living home alone....and being lonely, what are some good ideas for my mother, who doesn't have but 1 or 2 friends left, is very negative in general, so turns people off from wanting to spend time with her often, and resists going ANY WHERE alone, other than to visit my Dad or go to the store? She has refused for almost a year now, to have a caregiver coming to help her, yet she complains constantly about being home alone and being depressed and lonely. She refuses meds, complains of no appetite because she must eat alone, and when I (who lives 5 hours away and travel to see her and Dad about every 2 weeks now for 4-5 days each time!) try to problem solve what would fix it, all I get is 'everyone else has family with them. No one should be here with me but 'family'. Family should help more....etc. The answer to everything is 'family' doing for her. Well, there is only me in her state. One daughter of ours (so her granddaughter), with husband and 6 kids, lives in WA state; the other daughter/granddaughter, with husband and 2 kids, lives in London, Ontario and I live 5 hrs away in AZ. There IS no other family! She refuses to consider moving or selling her house, though both granddaughters have said, if necessary they would take in any elderly relatives, despite a long history of Mom being difficult to deal with. I cannot take her in because of issues with my own husband and his health and running a business still at age 70...AND her difficult personality.....clingy, needy, narcissistic and she follows me around like she's a puppy dog.....wants all done for her, BUT wants to tell us all how to do it for her constantly and if we don't jump when she wants it done, she gets arguementative and demanding....so anyhow....I am at a loss where to go except to insist, because I have POA that it's time for her to have caregivers coming for some minimum hours per day whether or not she wants it, OR her other choice would be assisted living or moving in with Dad. She's been diagnosed with early altzheimers herself, though she says the doctors who did the testing were wrong and she's fine. She hates Dad's place and insists she will NEVER go to 'a place like that' and she intends to die in her own home, and though 88 and in poor health, she 'knows' she will live to be 100 like her father did. If she lives to 100, I know I will die first from the stress of dealing with her!! So any ideas on how to deal with a difficult situation like this would be great. I am a retired RN, so I KNOW she is scared, doesn't want to admit that things are getting harder and harder for her and I can relate to all she is dealing with emotionally, but it's like she will NOT problem solve or see that 'what is....is' and we have to work from that point. She still wants to believe that Dad will get better and come back home someday. I've offered to have him come home with caregivers if that would help her....but she wants no one else in her home.....'just family' .....
Thank you for the article, covering some helpful points.
In theory, the regular schedule sounds lovely. However, good luck getting a dementia patient up when (1) they don't want to and (2) they're drowsy from taking necessary meds the night before. Add to this an oppositional nature and failure is a reasonable expectation. In such circumstances, even trying to exert control is wishful thinking if not delusion.
What may be more practical is for the caregiver to exercise control where s/he can. Use the patient's down time to get other chores done and for self care. Of course being this flexible isn't easy, especially if our nature is to prefer an ordered, predictable life. But surrendering to the inevitable leads to better mental and physical health.
Great article. Wish there were 20 Essential Caregiver Lessons. However, did find Suggestion #3 Listen and Take Action was somewhat disappointing. As a caregiver to my spouse, I have learned that compromise is the key. Instead of #3 having a chair lift installed, why didn't Scott's patient's family simply move the family night routine upstairs. Seems a much more logical and comforting way of including grandmother. And, chair lifts can be intimidating. But, the over-all the article was great.
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BUT
My husband retained his pleasant personality. Yes, there were very difficult episodes, but overall he was cooperative, satisfied, and willing to do what he could to enjoy our life together. If he had been a negative, self-absorbed,controlling, spouse who cared for no one but himself, I most certainly could not have kept him at home and retained my own health and sanity. I would still have loved him, and honored my marriage commitment to him, but it would not have been as his hands-on caregiver.
May I ask why your husband is still in your home? Doesn't it bother you that you may very well die before he does? My heart goes out to you. I am really curious why you remain in this untenable situation?
I don't understand the suggestion to get someone up 10 minutes earlier so they don't have to rush breakfast. Why not just have breakfast start and end 10 minutes later. We are talking about aging at home, right? Why would there have to be a rush through breakfast?
When I found it difficult for my husband to get ready in time for his adult day health program pick-up without rushing, I changed his pick-up time.
I really get nervous when I hear suggestions about "just get up earlier," as if sleep needs were flexible and not critical.
At the beginning of this article it states how nice it is for the person to be able to age at home. So after reading this I think this is where I should keep her as long as I can take care of her. It is just so hard sometimes when I would like to go somewhere without having to make arrangements or feel guilty for leaving.
She has some dementia, poor vision( can't read anymore) and has peripheral neuropathy in her legs so requires the use of a walker.
She has a pleasant disposition and gets along well with my kids and my husband. If she really wants to move I want her to be happy but I don't want her to move just because she feels she is keeping me from my activities.
Has anyone else had this issue?
COMMENT: My Dad is in a Memory Care Unit, and they DO have a routine. In the AM, they actually cook breakfast in the cottage kitchen, because they say, the SMELLS of breakfast help with getting residents up and going. When a resident is resistant, I notice that they do not push, but simply go to another and then in 5 minutes, come back and try again to get them to the table, or to take their meds. Frequently, by the time they try again, the resident has already forgotten about their resistance.
QUESTION: relative to someone with dementia living home alone....and being lonely, what are some good ideas for my mother, who doesn't have but 1 or 2 friends left, is very negative in general, so turns people off from wanting to spend time with her often, and resists going ANY WHERE alone, other than to visit my Dad or go to the store? She has refused for almost a year now, to have a caregiver coming to help her, yet she complains constantly about being home alone and being depressed and lonely. She refuses meds, complains of no appetite because she must eat alone, and when I (who lives 5 hours away and travel to see her and Dad about every 2 weeks now for 4-5 days each time!) try to problem solve what would fix it, all I get is 'everyone else has family with them. No one should be here with me but 'family'. Family should help more....etc. The answer to everything is 'family' doing for her. Well, there is only me in her state. One daughter of ours (so her granddaughter), with husband and 6 kids, lives in WA state; the other daughter/granddaughter, with husband and 2 kids, lives in London, Ontario and I live 5 hrs away in AZ. There IS no other family! She refuses to consider moving or selling her house, though both granddaughters have said, if necessary they would take in any elderly relatives, despite a long history of Mom being difficult to deal with. I cannot take her in because of issues with my own husband and his health and running a business still at age 70...AND her difficult personality.....clingy, needy, narcissistic and she follows me around like she's a puppy dog.....wants all done for her, BUT wants to tell us all how to do it for her constantly and if we don't jump when she wants it done, she gets arguementative and demanding....so anyhow....I am at a loss where to go except to insist, because I have POA that it's time for her to have caregivers coming for some minimum hours per day whether or not she wants it, OR her other choice would be assisted living or moving in with Dad. She's been diagnosed with early altzheimers herself, though she says the doctors who did the testing were wrong and she's fine. She hates Dad's place and insists she will NEVER go to 'a place like that' and she intends to die in her own home, and though 88 and in poor health, she 'knows' she will live to be 100 like her father did. If she lives to 100, I know I will die first from the stress of dealing with her!! So any ideas on how to deal with a difficult situation like this would be great. I am a retired RN, so I KNOW she is scared, doesn't want to admit that things are getting harder and harder for her and I can relate to all she is dealing with emotionally, but it's like she will NOT problem solve or see that 'what is....is' and we have to work from that point. She still wants to believe that Dad will get better and come back home someday. I've offered to have him come home with caregivers if that would help her....but she wants no one else in her home.....'just family' .....
In theory, the regular schedule sounds lovely. However, good luck getting a dementia patient up when (1) they don't want to and (2) they're drowsy from taking necessary meds the night before. Add to this an oppositional nature and failure is a reasonable expectation. In such circumstances, even trying to exert control is wishful thinking if not delusion.
What may be more practical is for the caregiver to exercise control where s/he can. Use the patient's down time to get other chores done and for self care. Of course being this flexible isn't easy, especially if our nature is to prefer an ordered, predictable life. But surrendering to the inevitable leads to better mental and physical health.