A myALZteam Member
My husband is really good with my Mum (83); he makes her laugh, sometimes takes over in answering the every-other-minute repetitive questions and now travels with me once a year to my parents’ winter home so we can take Mum away for a few days to give my Dad a break. I am very grateful for this help. However, this time, he got very frustrated with me for “trying to over-control everything” and I am pretty angry at the lack of empathy and support I experienced. When away with my Mum, I have to: make sure she eats (she forgets), drinks plenty of water (she forgets and then gets orthostatic hypotension which makes her dizzy and unsafe), takes her meds correctly (she forgets or mixes them up) and at the correct time; is warm enough; is not in pain (severe arthritis in toe); keep her happy and entertained, especially on days where she can’t walk much due to arthritis pain; remind her where she is as she asks every few moments; remind her where Dad is when she asks every few minutes; and respond positively and pleasantly every time she asks the same question (which has worsened to the point of asking every couple of minutes despite memory aids, etc. - sometimes more than 100 times a day). If we go out, I have to make sure she has her purse, her water bottle, her glasses, etc. and so the hunt is on, and often I have to reassure her several times that she has everything with her that she needs. She has lost sunglasses and a coat recently as well as $350. Dad and I have now noticed that her hearing is also rapidly declining. She is insistent she doesn’t want hearing aids, so now I am having to speak louder or almost shout, or risk repeating the same answer three times before she hears the answer. On this road trip, she didn’t sleep well, and I have to get up in the night if she gets up, because then she is very confused about where she is and I have to reassure her and settle her back into bed. It wasn’t my husband getting up with her several times a night! For primarily my Dad, but for me when I’m with Mum, it’s a 24/7 responsibility and worry, as most of you know. This is all in addition to the sadness and worry I feel constantly about my Mum, whom I love to pieces and want to look after well. I am spitting mad that my husband doesn’t seem to comprehend the impact of all of this on me, especially when I am still grieving the catastrophic death of my daughter (his stepdaughter) almost five years ago. It hurts me as well that my daughter can’t be with me and my Mum on holiday with us in a lovely place. How do I get him to understand how hard this is on me and that the responsibility for Mum’s well-being and safety is a lot more than just making her laugh and answering her repetitive questions? Thanks.
My spouse never understood how hard it was to look after my mother and it broke our marriage. My siblings also never understood how hard it was and we were estranged for about a year after my mother died until I was able to forgive them and move on. My mother died in 2018 and it has only recently that my old self has returned - creative, fun but also a lit more grown up because I am now one of those older adult orphans.
I totally understand how you feel. I am dealing with this disease and my husband. 2 of my 3 adult children live with us but one works at night and sleeps during the day and the other works during the day and has long hours. So it's still me and him. My husband is arrogant and prideful and when he gets frustrated with me constantly redirecting him then he talks crazy to me. I ignore it for as long as possible and there are times when I have snapped at him. So the kids only hear me when I respond but they haven't heard what he has been saying to me all day. So when that happens "mom doesn't have the patience, you know dad is sick" But they don't have any idea because they don't deal with it ALL DAY, EVERY DAY. Until family does the job that you do, they will never totally grasp your feelings. I do have a Home Health Aide that comes in and that gives me a little bit of a break, some me time. Have you looked into Home Health or maybe a senior day center? That may give you a little bit of a break
Your husband or anyone else will never understand what you, as a caregiver is going thru. My advice is to get as many breaks as you can. If anyone offers to help always, always take them up on it. It is a long hard road at the best of time. Having a pet that the patient can give attention to and love helps a little.
SO endearing and yet sad how we try so hard to help our loved ones. I feel so exhausted and that there is no end in sight. I always get worried if we have to be gone overnight as my husband, 64, does not do well in strange situations at night. Last year we went on a short vacation and he had an anxiety attack with shortness of breath and inability to settle down. In desperation I gave him some CBD oil I had brought in case of an emergency anxiety event, and turned on a night light which is red. Within 10 minutes he was sleeping well and acted normal the next morning. I believe that the light removed anxiety of not knowing where he was and the CBD oil is excellent at removing anxiety.
What area do they live? I use something in herts called crossroads whereby once a week for a few hours my dad sees the same lady that assists him to go and see his wife our mum in a care home.now if mum wasnt around she would suggest other things that are manageable for dad.
My mum has vascular and dad alzheimers. X
Yes, Jacqueline, I understand. Every time I leave my Mum, the melancholy sets in about her situation. Her perseveration and repetition now is a never-ending cycle, with her now not going over each week in her calendar repeatedly, but now each day on the calendar over and over again. It is VERY difficult to distract her from her calendar, her only tool to feel that she has some control. If she gets bored even for one moment, she reaches for it and the cycle starts again. My current issue is an autoimmune disease of which fatigue is a major symptom and hindrance. Mum has more PHYSICAL energy than I. So even if I try to give Dad a five-day break, I myself am utterly exhausted after three days, and then Mum complains that we're not out and about doing things. She has lost all her hobbies, so going for a drive, a walk, for lunch, am occasional suitable movie she can follow, or to do errands (even a car wash) keep her distracted. But after three days of that, I can't function. I use Netflix, "Hello" magazine (she loves the Royals) at home to try to keep her occupied, but she is quickly bored and then wants us to go out again and do something. SO hard. NOT complaining about my Mum, but about the horrible impacts on her and us of this rotten disease. I try to be creative about things to do, yet there are so many things she can't be convinced to do! (arts and crafts, jigsaws, pottery, gave up her sewing, gardening, bingo, was never into sports so no Tai-Chi, swimming or anything like that.) She will still do crosswords and word search puzzles, but less and less now. She loves small children and animals, so I try to take her to events or places where she can watch or interact with these (even a visit to a pet shop hat had animals). She would NEVER go to a seniors' centre or day programme! I love my Mum to pieces, but honestly, I begin to wish she would go quietly in her sleep than go down this awful path....
TAKINGcar of my spouse and am whipped. my dad is in rehab at 91 and deteriorating fast supposed to discharge to alf tomorrow where 88 yr old mom is, trying to meet the needs of all 3 is wearing me out,,, siblings help but not closeby. went out with friends last night which was great but after 10 iutesback home couldnt reason with him and lost it. TRYING TO MEET THE trying to get him into a daycare 2 days a week and he is resistant young at 71 but is like a 4 yr old. tantrums sulking.. this disease is killer he survived stage 4 bladder cancer 6 yrs. and this is much worse. i have good supports but not able to go to my support groups. those that live with this know.
Exactly! I also have a 10 yr old & hes much easier to care for
Marlene Obrien, yes our lives sound very similiar. I do see a therapist at least once a month which sometimes is helpful. but there are days I think I cant go on, just feel like crying. Its like taking care of a 3 years old except sometimes you can reason with a child. Sundown is the worse. Hugs to you.
Alison and Marlene..... I care for my Mom (live with her too) but I have been blessed with wonderful & thoughtful brothers. I get some respite which I am grateful for. You both should contact ALZ Society in your area and see what can be done. Lots of people volunteer for things....perhaps there is someone waiting on the sidelines for your call.I will be sending out prayers that someone steps up somehow to help you both. I know how hard you are working! -Sharon